July 11, 2011

Revisiting the scary place

After the good news from my doctor last month, I was able to more or less put out of my mind anything related to cancer. Within a few weeks though, I noticed that the lump was bigger--that I could feel it just by running my finger over the top of my skin, and that I could actually see it most of the time. I gave the breast center another call last week and they asked me to come in as soon as possible.

Another ultrasound confirmed that the lump has grown--at a rate that exceeds even the most aggressive cancers (so I think this bit of information was filed under the "we think this is benign" category). More importantly, and alarming, the cells inside the mass have completely changed. A month ago they were uniform and unassuming, this week they are jagged and lined up in odd patterns.

My doctors do not know what they are looking at. They have little experience with these issues in lactating women, they said so themselves. The only way to know for sure is to do a core biopsy.

I have resisted the core biopsy procedure in an effort to avoid the very real risk of a milk fistula. I've been told that the risk is relatively low, but because my tumor is located centrally in an area where all the ducts come together the odds are increased.

If it does occur the ultimate solution is to wean from nursing, which would be devastating.

I'm disappointed and becoming increasingly angry that more information isn't available to nursing mothers when it comes to making decisions like these. Even websites like the American Cancer Society and Susan G Komen, do not address cancer or diagnostic options in the context of lactation.

Hopeful that some unpublished information might be available, I spoke to an oncology nurse at the American Cancer Society.I was dismayed that she wasn’t able to answer any of my questions or provide any concrete guidance. It’s difficult to make educated decisions without data.I expressed frustration that there isn’t more to base my decision on, and she responded in agreement that “most women don’t like to breastfeed”, speaking to the fact that low prevalence of breastfeeding renders research on the topic of cancer and nursing a low priority.

Her comment was irritating because prevalence of breastfeeding isn’t low because women “don’t like” to breastfeed. On the whole, our society doesn't value breastfeeding. That right there is the problem.

Yes, there are overarching recommendations from the Centers for Disease Control, the World Health Organization, and the Academy of Pediatrics whose guidelines differ in some respects but ultimately agree that breastfeeding should be exclusive for the first 6 months and continue through the first year, and beyond for as long as the mom and baby desire.

The problem is that there is little societal support for women and their babies to establish and foster a nursing relationship. Modern birthing practices, standard protocol in NICUs and nurseries, stingy maternity benefits, and additional challenges for women once they return to work all add up. Not to mention the emphasis our culture places on early independence for babies, and the pressure that many new moms feel as they are bombarded with messages big and small that minimize breastfeeding and encourage the weaning process.

It's no coincidence that while 75% of new moms initiate breastfeeding at birth, only 13% of moms are still breastfeeding exclusively at 6 months, as recommended. Initially, it was suggested that I return to consider my options for addressing the tumor once Merritt is weaned (I think they figured it be at most a couple of months), but when I said that it wouldn't likely be for another 14 or so, they had to change their game plan. I have doctors who are truly well intentioned and who want to support me in the ways that I need to be supported as I move through this process, but I'm beginning to feel as if my effort to preserve this aspect of my relationship with my son (especially for his nutrition) is considered to be rhetorical in the face of something that is potentially cancer. I get it, and at the same time I think it's crazy.

Anyway, I felt overwhelmed by the fact that we were revisiting the biopsy topic, and for several reasons I decided to wait another month in order to do more research and to further weigh the potential benefits against the potential risks.

Does anyone have any stories of core biopsy (with or without milk fistula) while nursing?

I am saddened to hear this news! One (sort of odd) avenue that might be worth pursuing is emailing blogger amalah.com. She is doing thing for cancer awareness (her father recently passed away) and is also a mom of 3, currently nursing her infant son. She has a large audience - maybe she could help? Just a thought! Will be thinking of you.

Hello! I have been reading your blog for awhile but have never commented before today. This breaks my heart. I both work/go to school at a large School of Public Health located in a research university and many of my colleagues devote their lives to the promotion of breastfeeding while others devote their lives to the prevention and treatment of cancer. And we all read research like it is going out of style...so I am going to make it my mission to provide you with something that can help you in your situation....just give me a few days of putting my feelers out and seeing what I can find. Do you have contact info (like an e-mail) anywhere on your blog or could you post it for me so I can send any messages I get directly to you? Take care, Katie

I'm a regular reader of your blog and just wanted to let you know how sorry I am to hear this. I also wanted to let you know I agree with you that while I agree that overall the societal support for breastfeeding is severely lacking, I'm hoping that trend is turning around. I feel that my community offered lots of support (as well as some not-so-supportive comments) before and after my son was born. While I was never able to breastfeed exclusively I still provided breastmilk to my son until 11 months which was an accomplishment I am very proud of considering the stumbling blocks I had to work through. What I wanted to mention to you specifically is that my community wonderful community breastfeeding center which I've heard is one of a kind in this country. You may want to give them a call and see if they have any information that can help you. Their website is www.milkworks.org. I figure it's worth a shot if you can't find the answers you need elsewhere. Good luck to you. I'll be keeping my fingers crossed that everything works out positively.

Oh my gosh, I am so, so, so sorry to read this. How devastating. Unfortunately, I have no advice for you, but definitely can commiserate on how poorly breastfeeding "situations" are researched. I came across so much of that when I was trying to breastfeed Allie without a full supply of milk. Basically, everyone asked why I was even bothering and why I didn't just give her formula. It was an uphill battle for sure. I actually have a friend who was in a similar situation to yours initially. She was close to needing a different type of biopsy that wasn't going to allow her to breastfeed (maybe it was a core biopsy, I'm not sure she didn't say, but I know she would've had to wean), but at this point her lump is stabilized in size and so they proceeded with a needle aspiration first. At that point, they actually withdrew milk from the area, so they are thinking she's probably okay and they are re-evaluating after she weans. She also faced the same thing though at first because they just told her to wean so they could do all the tests and she countered with not wanting to wean because her baby was/is only 4 months old. When they asked her how long she was planning to "do this" i.e. breastfeed, she said at least another year and they were pretty floored. They had to call in "special help" to see what to do with her "situation." It really saddened me when she told me about the whole scenario because they told her if the needle aspiration didn't end well, she HAD to get a different biopsy and then she was done breastfeeding and it didn't feel to her like anyone cared about that aspect of it. Wow, long story, sorry. Anyways, so I have no advice to give you on an actual core biopsy, but please know that I'm thinking and praying for you and your family. I hope you get some answers soon!

Hey J- I am so, so sorry for what you are going through. I can imagine that you are emotionally worn out and still trying to be the best momma possible. Let me come over and play with Roscoe or take him out in the morning so you can do research or whatever you need to do. Also, I am sure this has been addressed and forgive my ignorance about biology but could you nurse exclusively on the non-tumorous breast while the other is being checked out?

Hello! I am checking back in after my post yesterday - A colleague of mine and a breastfeeding advocate posted your question about core biopsies while nursing on a women's health listserv and a quick reply was sent. This link provides some information: http://bfar.org/possible-diagnostic.shtml

It was also recommended that you reference the section on "Tissue Sampling Procedures" in the book The Womanly Art of Breastfeeding. This section provides details on how to balance a tissue sampling procedure with nursing a young baby.

The women who responded to your question is named Ginger Carney and is the Director of Nutrition Services at St Jude Children's Research Hospital in Memphis. If you have additional questions it might be worth looking her up and shooting an e-mail.

I also found a number of articles by using the Google Scholar feature of google search. They are a mixed bag - both of case studies in which women had to stop nursing and other articles which have recommendations for how doctors might have avoided this outcome. I am sure you can find similar articles, but if you are interested in me e-mailing any your way just give me the correct contact. Good luck and I hope this helps at least a little.

Wow, thank you to everyone. I'm moved by your kindness and generosity in response to this post. I appreciate your compassion, it means a lot.

Natalie: Thanks! I'll look forward to hearing from you.

Laura: I'll email her! And thank you so much for tweeting on my behalf.

Katie: Thank you for offering your researching skills. I have an mph too--where are you going to school? You can email me at marblesrolling@gmail.com. I would love to read more about the ways that were recommended to avoid milk fistula. I'll check the other resources you mentioned too!

Josephine: I've been in touch with my local chapter, but have yet to hear back. This reminds me that I can/should post something to their facebook page....

Meg: I agree, I hope that the tides are turning and I think in many circles there can be found great support for breastfeeding. If it had not been for my midwife (a former lactation consultant and la leche league leader) and my local la leche league chapter, I don't know what the outcome of my hopes and intentions to nurse would have been. I also have relationships with all the moms from my birthing class, and we were able to provide a sounding board for each other as we each figured out how to nurse our babies. True support definitely exists but it isn't well incorporated into the systems that serve moms and babies in this country, it really has to be sought out. And, 11 months certainly is an accomplishment. I will check out your link. Milkworks looks awesome, how lucky for you!

Raising Snow Peas: Thanks for the anecdote. Every bit of info I get my hands on is helpful in one way or another. I hate how everything is so black and white with nursing. I wonder if weaning is the lazy man's solution to milk fistula, or if it is really the only solution. Still waiting to hear back from la leche league on this one. I admire your determination and persistence to feed Allie. You are AMAZING.

Hey Heidi! You are right in that if the milk fistula occurs I would still have the other breast to feed M with. I've been thinking lately what would happen if I stopped nursing on the one side long enough to let the wound heal(if I got a fistula), but then began an aggressive pumping schedule to bring the milk back...think it could work!?

Are you suggesting to amp up my supply on the one side in anticipation of a fistula? If I knew that a milk fistula was inevitable, I definitely would. But there's no way to know yet. On another note, I wonder how long it would take to build up my supply in order to feed him exclusively on one side if I needed to. More questions!

Another, less perfect, option I just thought of would be to begin a more extreme pumping regimen with the idea that if you had to wean you could rely on stores of milk to avoid formula for longer. Not perfect, but something.

I got my MPH from University of Minnesota and am currently working on my PhD in Epidemiology. I have made good progress on my dissertation but balance it right now with a two year old and another on the way! It is a crazy life.

Kellymom "Yes - your baby can get all that she needs as long as she is allowed to nurse unlimitedly and unrestrictedly - even if you nurse exclusively on only one side"

There may be better articles but this one does address nursing only one one side in the event of surgery, etc. You may have already read it :) http://www.kellymom.com/bf/concerns/mom/lopsided.html

I don't know what you've decided about a core biopsy but you could nurse exclusively on your good breast and your body would regulate itself to M's needs. If you could continue to pump on the other great...but as the article suggests you could allow the one side to "dry" and be a little "lopsided" and once you naturally wean your breasts would even out. A ray of hope at least!

I found your blog through Navigating the Mothership.I am an IBCLC but a new one, and I don't have any suggestions myself for you, but I have two suggestions:

1) I subscribe to Lactnet, which is a worldwide listserv of lactation professionals, and would be happy to post a message there on your behalf asking for more information from that pool of knowledge.

2) You might be best served by speaking with a doctor who specializes in breastfeeding medicine for a phone consult. Dr. Mona Gabbay in NY would be the first person I would think of - she has a website which you can subscribe to, but you might be better served by contacting her directly. If you ask around, there may be someone more local but breastfeeding medicine is unfortunately a rare specialty!

If you'd like to get in touch with me about any of this the best way is probably to e-mail me directly: publichealthdoula AT gmail.com.

What a tough situation for you...I am so sorry you have to go through this.

I just commented on your post on Kellymom's facebook page. I am not a medical professional or lactation consultant, but maybe my own, similar experience can be of help. Please let me know if you want to talk more about it, or hear more about my experience.ccbischoff at gmail